It’s time to talk about who can access your digital genomic data

We are approaching a time when you might be too scared to have your genome sequenced.

Only last week, a US senator called for an investigation into the privacy policies of direct-to-consumer DNA companies. But this is only one piece of a puzzle that is about to get much more connected.

As with any kind of personal data there are a number of concerns regarding collection, transmission, storage and use. But unlike most other data, your genome reveals intimate information about not only you, but also the people to whom you are related.

It’s time to talk about who can access that data, how, when and why.

The current situation

Historically there has been a natural separation between these databases, because they tend to contain different types of genetic data. Medical genetic databases, for example, have typically screened specific genes, and this data is usually not variable enough to be useful in law enforcement.

It’s impossible to put a precise figure on the number of genomes that have been sequenced to date. Projects like BabySeq in the US point to a future in which genome sequencing may be a routine screen at birth.

Genome data is not anonymous

Keeping databases separate and anonymous may seem like a solution but this will be very difficult to accomplish. It is already possible, at least in some instances, to use information from a complete genome to locate the donor through searches of publicly available ancestry databases.

The establishment of mandatory DNA testing seems far-fetched, however that may not be the case everywhere. In 2015, Kuwait passed a law mandating DNA collections from all citizens and residents, although this was revoked earlier this year.

Our digital genomes provide information about our predisposition to various medical conditions and this is attractive to insurance companies. The predictive power of the genome is only going to increase over time. Once a consumer has taken a genetic test, they may be required to disclose that fact to an insurer or risk fraud charges.

Australia just created its first National Health Genomics Policy Framework, for 2018-20, and this begins to create guidelines for genomic data. This policy is geared towards medical research, however, so would not apply to consumer DNA services, and does not make provisions for law enforcement access requests.

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